January 30, 2012

To help make up for the sad, gloomy Grim Reapy nature of that last post, here's a little something that Schuyler and I did tonight while practicing her marimba music for her next concert. I asked her if she wanted to share any of it with all of you, and we went through all the clips we shot and found the two she liked the most:

And then we started to have some fun, and ended up with this unedited and unrehearsed forty seconds, which is now just about my favorite thing we have ever committed to video.

This one is a little dark, although it's also one that I'm slightly more proud of than usual. It deals with a subject that a particular, often forgotten about subset of special needs parents don't usually like to talk about but which never leaves our minds entirely: the possibility of our child's disability proving to be fatal.

It's something that has been on my mind a lot lately, mostly because of Schuyler's increasing seizure activity and that recent story about a kid Schuyler's age who died as a result of his own polymicrogria. I thought it was time for a reminder, perhaps mostly to myself, that among all the things we advocate for, significant and petty alike, some are beyond our reach.

Major league bummer, I know. Here's a picture of Schuyler's cute little piggy (buckled up in the car because, you know, safety first), just to cheer you up. (Schuyler is into these big-eyed animals now, and I have to admit that whoever came up with them is a genius. I never had a toy make me feel guilty for NOT buying it before. I know, I have Issues.)

January 28, 2012

Earlier this week, Schuyler and I went down to San Antonio to see our dear friends Jim and Kim, Schuyler's godparents. (Or whatever we agnostic heathens are supposed to call the folks who will take up the feeding and watering of our kid if Julie and I murder each other or get eaten by a sasquatch one day.) I was going in order to work with Jim's trombone class, and Schuyler was along for the ride. She got to see two of her favorite people in the world, and she got to miss two days of school, so it was a solid win for her. It was also an opportunity for Schuyler to get in a percussion lesson with a member of Jim's talented staff, sneaking in some actual learning amongst all the fun truancy.

Schuyler has to work hard in band, but she's staying on top of it. Her band director here in Plano continues to be fantastic. She strikes the perfect balance between accommodating Schuyler enough to keep things realistic for her and at the same time challenging her with a meaningful band experience. I've already shared Schuyler's previous concert experience, with her kind and only slightly narcissistic permission. (I know, she comes by it honestly.) Her next performance is coming up next week, and she will again be playing a multitude of instruments, including crash cymbals, the bass drum (her favorite, by a long shot) and the marimba. That last one is still quite challenging for her, requiring as it does for her to read music, a skill that she's working on and slowly improving upon. Her band director spent some of her no doubt valuable time rewriting a very difficult part for Schuyler to make it more manageable, but it's still hard enough to require a good amount of work. The challenge frustrates Schuyler, but it is also very good for her.

Schuyler spent most of the day in San Antonio observing the bands, including watching her father play, which I believe surprised her; I think in her eyes, I was like Atticus Finch shooting the rabid dog in the street. More importantly for her, Schuyler watched the other kids. They were mostly older than her, but only by a few years, and the music they were playing was harder but not drastically so. She saw how they worked together, and how they helped each other. In short, she saw how they behaved as a community, as friends working together to create something special while having fun doing so. (Disability community, take note.)

When Schuyler took her lesson, I took a few photos and then hid in the back for most of it. I eventually left the room so I wouldn't be "that parent", although honestly, I should have left them alone the whole time. (Well, what are you gonna do?) What I saw when they began was what I've observed countless times before. There was a bit of initial confusion on the part of her new teacher on how exactly to approach Schuyler, but then subtle adjustments as Schuyler showed him how she could focus and work.

Schuyler is good about teaching her teachers how to teach her, if that makes any sense. In circumstances like this, Schuyler's disability comes to the front, but she's also very quick to show that it doesn't get to call the shots. Teaching Schuyler isn't like teaching anyone else, and the good teachers recognize this but don't let it scare them off or cause them to give up on her. This was one of the good ones. She's been fortunate this year in that most of her teachers have been willing to do the work to break into Schuyler's world.

Schuyler presents as neurotypical most of the time, but only on the surface and rarely for long. Her differentness can take people by surprise, and I confess that I judge those people, often unfairly, by how they respond to that surprise. But as she embraces her new role as a percussionist in her school band, I see for Schuyler a path forward, and a way to make her way in the world on terms that are very much of her own making.

Everyone claims to value the act of marching to the beat of a different drummer, which suggests a need for that different drummer. Schuyler's got you covered.

January 23, 2012

I've written a new post for Support for Special Needs, this time on the changing nature of how Schuyler uses AAC technology. Don't worry, it's not very technical at all. You can be assured that a blog post isn't going to get too far into the weeds when it includes the words "farting monkey". You're welcome.

January 16, 2012

This week at Support for Special Needs, I've written about the awful story of the Children's Hospital of Philadelphia's shameful treatment of a little girl with a developmental disability in need of a kidney transplant. If you haven't read about it, I hope you had a nice weekend offline. Because, seriously, it has generated more outrage and action online than I have seen in a long time. And rightly so.

Exciting News: Look for me at Support for Special Needs weekly now. (Or weakly, if you don't care for my writing. You know who you are.)

January 15, 2012

It was a rough weekend for Schuyler. The monster that has been plaguing her lately was as hungry as ever. More complex partial seizures, more storms in her head, leaving her exhausted, sad, confused.

The worst of them hit her in a toy store, sapping her energy and her interest. One minute we were wandering the aisles of Toys-R-Us, dueling with Nerf swords and contemplating the purchase of a very cool dinosaur to add to her collection. The next, she stood in place as if she had no idea how she got there, face flush and eyes blank. We went next door to a pet store, and there was a group there adopting out puppies. There were puppies to play with, but not for her, not this time.

"Can we go home?" she asked quietly.

Later, as we drove to pick up Julie from work, Schuyler and I discussed her seizures. I explained again what was happening, and what we were might do to bring them under control.

"We're going to figure out how to make your brain stop getting mad at you," I told her. "We're going to try our very, very best to make things better, I promise."

She thought this over and nodded. She wasn't sad, exactly. More like... resigned. Without looking at me, she pointed to her throat.

"I want to talk like everyone else," she said.

I'm not sure what it says about me as a parent or a person, but all I could say to her was, "I know, sweetheart. I know. And I'm sorry I can't give that to you."

It says everything about Schuyler that she seemed entirely satisfied with that response.

January 2, 2012

I have a new post up at Support for Special Needs, about the coming of the new year and what it can mean for parents of kids with special needs. I'm looking forward to continuing my association with Support for Special Needs; the site is a fantastic resource and safe place for advocates and caregivers, and I'm honored to have the opportunity to contribute to their work in my own small way.

Oh, and Happy New Year, everyone. Good timing, too; I was all set with 2011.

January 1, 2012

Friday was a rough day for Schuyler. Not one but two seizures, we believe, and the second one actually left her in tears. The confusion, the disorientation, the light-headedness, they upset her. She's aware of when something isn't right with her broken brain. Well, of course she is.

(Note: Before I go any further, there's something I probably haven't made clear. I know it seems like I share everything here, but the fact is that I don't, not by a long shot. I think that's appropriate.

But when I talk about the confusion and anxiety that we feel about Schuyler's seizures, I might be giving the impression that we are just sitting here on our hands, muttering "What the fuck?" and crying ourselves to sleep. I've gotten a few emails suggesting that we're not doing enough, or even anything at all, for Schuyler, based on that erroneous assumption. Please, don't be that person.)

We've been trying to catch one of them on video, but it's tricky. Search for "complex partial seizure" on YouTube and you'll see why they are easy to miss. Schuyler's seizures are mostly become apparent by their after-effects, the moodiness and the confusion. Sometimes she tells us that she is dizzy, which seems to happen right before a seizure, but mostly she simple tells us sadly after. "My brain is mad at me."

So we didn't catch them on Friday. One occurred as she was waking up, we think, and the other in the car as we went to a movie. We tried to give her a happy afternoon, however, and by the time we engaged in some strict "cheeseburger & milkshake" therapy, she was mostly over it, aside from being tired.

We were all over it, I think, until I got a Google alert email on my phone. I have one set up for "polymicrogyria", just in case some new bit of helpful research is posted online. But that's not usually what it catches. And it wasn't this time, either.

“A beautiful, angelic child, full of grace and patience,” writes Anthony Moyson of his son, Isaac Dylan, who died in February of a rare brain disease called Polymicrogyria, aged 13.

Polymicrogyria. Thirteen.

It's easy to forget. It's easy to pretend that the only obstacles in Schuyler's path involve school or the politics of the playground or her murky, unsettled future of trying to make it in the world independently. It's easy to pretend that incivility or social injustice could be the only things that could keep her down. It's easy to lose sleep over the question of what will happen to Schuyler when we are gone, but not over the very very horrible alternative.

I like to believe that Schuyler's monster now has blunted teeth and clipped claws. I think it probably does, mostly. But as her maybe-seizures get maybe-worse, we are reminded of the impermanence of health and the persistence of monsters.